posted
I'm having a hard time wrapping my head around all of this. I know its major and its taking over my life but I still cant come to terms with it. When I read what people are writing I get angry. I was misdiagnosed with first shingles, then limes .., then the western blot came back negative and so I went on to see more doctors and they came up with MS.
I went on thinking I had MS for almost 3 years. When I started re-evaluating my symptoms I realized I either had 5 or more different illnesses or slowly started to believe I was just a weak pathetic excuse of a person that was always thinking everything was wrong.
Finally about 2 months ago I started talking to my new primary who actually listened to and believed me and when I had my blood work done again I came back positve for Lymes. I guess the steriods I took for the shingles I didnt have before I took my blood test 3 years ago messed up the western blot results. So now what should of been cured and probably could of been cured then I will more then likely be stuck with for God only knows how long. I know I should be happy that I dont have MS but I'm not. I'm tired and frusterated. And even worse. When I read other people talking about the downward spiral there life took due to this disease I get mad at them. I know. Sounds crazy but I am.
I'm in denial and I know I am because I keep thinking I can do things I can't and every time I try to start something again like a full time job for example when I'm on an "up swing", or on the lower end of things like struggling to walk out of my house and up the stairs I realize how screwed I am, like its starting all over again. I'm still surprised about just how little I can commit to and accomplish. 3 years ago I worked 60+ hr work weeks, was at all my sons games and extra activities plus I had a full spectrum of friends and a great social life. Now everything I start I can never seem to finish or even worse I cant remember what I started. I feel like I'm going crazy. My son asks for a snack and I feel like he just asked me to paint his room on some days.
I'm exhausted but I cant sleep well because when ever I try to roll over when I'm sleeping I wake up from intense pains in my back, shoulders, rib cage and bent knees. Trying to bend my fingers even to adjust my pillow ruins the whole expierience. I want to have one more child but I have to wait until this gets resolved..., and by the way when will that be exactly because after reading the myjority of these posts it seems like "never" ? Well thats just not good enough... I'm really mad.
I always read about people taking antibiotics but what does everyone get to treat there symptoms in the mean time. Theres so friggin many of them, where is the magic pill to atleast offer some relief from the exhaustion and pain. People with FM get Lyrica and so on. Well what do we get ??? Anything??? How do you manage this disease until its under control ?? Please please tell me there is something out there. A good nights sleep, the pain some what tolerable and a little energy I would do just about anything for. And please.., some one out there tell me this thing gets better. I'm 33 and I really dont want this to be something I "just have to get used to" . I want my life back.
[ 11-06-2010, 11:50 AM: Message edited by: coley77 ]
Posts: 20 | From harwich ma 02645 | Registered: Oct 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
It's really hard for some Lyme patients (including myself) to read HUGE paragraphs. You will get more responses if you break them into like 3-5 sentence paragraphs. I would do it for you but I can't read all that.
posted
You are lucky you are in an area where there are actually LLMD's... Lyme Literate MD's... Please post here to get a list of names of drs near you:
There are plenty of things to help with symptoms. You can take Lyrica if you want to.. or there's Cymbalta, Ambien, whatever. Just find a good dr and get on treatment NOW!!!
Moving this to Medical Questions, where you will get more help.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Sorry you are ill.
I certainly can understand the feelings of denial and anger. However, those feelings won't get you anywhere. The added stress will only make you feel worse.
Take the above advice and find a LLMD. You can get well!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I know just how you feel! Don't worry! PM me anytime you want!
OKAY,
I take lots of narcotics just to be able to be comfortable in bed.
Simple chores and errands now are a huge task for me and I used to be a athelete, plus I was just at a point where I could compete and teach others. I also had a full time job and I am a parent.
Now I struggle just to get up in the morning.
Yes, I wish there was some type of game plan.
You are probably TYPE A personality like me.
SO here's the skinny with LYME
Write off the next three years at least. If you recover sooner than that , it will be a bonus.
No matter how much I tell myself that though, I still think I will be better next year, year 2 of treatment, but I just don't know.
I have been getting treatment for a year.
SO, I take narcotics for the pain, and I just discovered that Indocin really helps.
I also discovered that Gabapentin at the highest dose, plus Amytriptaline at the highest dose, for me makes me happy and pain free. So I am going to try those meds again.
I thought I was cured when I took those meds, and stupidly went off of them. The pain that followed was torture.
Lyrica didn't even touch the pain, and I just tried Cymbalta, and it didn't work.
I take Zopiclone, the highest dose, so that I can sleep, and sometimes, I get so tired during the day, that I take one so that I can nap.
You sound like a strong person. I know you can beat this.
It took me three years to find out what was wrong. I went to the hospital emergency room 3 times, just bawling like crazy from the pain. They wouldn't help me and told me never to come back again!
All the regular doctors and specialists here mock me and patronize me, and have actually bullied me. My LLMD is the most loving and compassionate person I have met. They really care and listen. I can tell them the craziest symptoms and they take it into consideration.
I fax them long letters once a month and I describe to them in detail all my symptoms, how I felt and how bad the pain was. I do that before my apppointments.
PM me if you want. I am stuck in bed because I am really herxing from a new med. So I don't have much to do and I feel kinda useless. haha
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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My LLMD does not do any of my pain and symptom management.
My PCP physician got me into this mess so I make her deal with it on a monthly, and sometimes weekly basis.
If I am feeling a lot of pain, and feel tortured, I make a appointment and see her the same week.
She is annoyed with me, but I don't care.
She actually admitted to me that she and all the specialists in the city know that I have LYME! the audacity!
Your LLMD can give you great advice and help. I agree with the others.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Tears and prayers...
Wish I could help. Trying to help my son is about all I can do. I can't seem to get doctors to prescribe anything for his pain...
missing, your LLMD prescribes those meds you mentioned? Indocin, Gabapentin and Amytriptaline?
Do you know if any of them are safe for children?
The pain is the hardest part. I can't stand to see him in so much pain!
Coley - does your son understand that you are sick? How old?
I would love to see more posts on how to manage symptoms and get relief from pain. Possibly without prescriptions... I have asked my LLMD and she won't prescribe anything for the pain. That is my only gripe with her. Other than that, she is great.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Coley, once you get a good lyme doctor, like one recommended by people at this site, you will start to improve.
Some people notice improvement within 3 months. Some people get rid of some symptoms right away. Some people take 1 year to notice improvement. So, no one can tell you what will happen in your case.
For 10 years I searched for a doc to figure out what was wrong with me. I was told my diagnosis was menopause and other than that I was offered antidepressants.
I was angry that at the beginning of the 10 years I went to a well-respected doc (waited 3 months for my appt) and he asked me if I was ever bitten by a tick. I said, "No, but I get them on me all the time." And, that was the end of that.
He obviously thought of lyme disease but decided not to test me for it and so that meant that I had 10 more years of living with these horrible symptoms, before another doctor finally thought of lyme and tested me for it. That's when I finally got my diagnosis.
So, I understand where you are coming from.
I completed my lyme treatment over 5 1/2 years ago and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
This can be you too, but the doc is the key to getting rid of this disease. Many docs treat lyme, but not many know enough to get rid of it for a person.
Get the best lyme doc you can possibly afford. Then, hopefully, you will begin to respond to treatment right away. Even getting rid of one symptom is an encouragement. As soon as I started on antibiotics, the terrible feeling of being stabbed by thousands of pins and needles went away. So, that was an immediate blessing.
The fatigue can last for a good while. But, with good treatment, it will improve.
Treating lyme takes time. It is not done in a few weeks. See it through to the end, until you are symptom free. That way you will be free of it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
simple...print out the Green Lyme booklet from http://lymepa.org (no www) It is a great primer on Lyme & other diseases Tick carry.
Last pages are symptoms & list of commonly diseases it is mis-diagnosed as.
MS is one oif the TOP one it is mistaken for (though MS is not a real disease dispite what doctors & neuro try to tell ya.)
Even Google CCSVI - check out how MS is possibly caused by vascular (veinous)problem.
BY the way...I was told MS for 17yrs then found a llmd who did right test/right lab & lo and behold...POSITIVE for Lyme, Bartonella & Babesios.
Don't fret. You'll find help & answers.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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